Day Fifteen – Post Surgery and Medical Rant

My name is Rick and I have cancer

Sorry about the boring post yesterday.  I worked so hard on the surgery post that I really didn’t feel like writing more.  That post while boring said it all… I survived the scary night and was feeing much better the next day.  Bottom line; the night is so imposing while the day is so hopeful.  Why is that?

Last night I found a confortable position and slept pretty well.  For the past two nights, I have been sleeping – or at least trying to sleep – sitting pretty far up.  The key was to have a pillow under the base of my neck without having anything touching the top of my head.  The top of the head is where I have this giant balled up cloth thing (it is called a “bolster” and if you Google that with skin graft be forewarned, it is gross!) that is keeping the skin graft in place.  It looks like the little hats worn by the kids in the King and I during the March of the Royal Siamese Children scene… Go ahead and Google that or just check out a video here (http://www.youtube.com/watch?v=mnD1JtSALCA).  The King and I funny hats are a much better image than you will get from looking for bolster I assure you.

That position worked OK until I fell asleep at which time my head started to list to the right.  This is fine for a while but I’d start to get stiff after a bit and that in turn wakes me up.  Last night, I tried putting a pillow on top of the right shoulder in order to give support to that side of my head. That worked like a charm and I was able to sleep…. I dozed around 9PM and didn’t get out of bed until about 8AM.  While I didn’t sleep the whole time, it was a lot and I really needed it.  I woke up somewhat refreshed.  Sweet.

I have spent all day out of bed until 9PM (now) when I finally started feeling drained.  I am tired and still dizzy from the anesthesia but I am off pain meds.  I would rather be in pain with a somewhat clear head then feeling no pain and nothing else.  I have had visits from a few people which has been great.  Keep’em coming.  I had 3 visits from friends today which was excellent.  Thank you so much for taking the time.  My sister-in-law and brother-in-law also stopped by on their way to visit assisted living facilities close by.  That is a rough transition but I think they are doing great.  Big bummer to have the big C in the family as well.

I have spent a lot of time thinking about healthcare in the past few weeks.  I have made some choices that in hindsight turned out to be bad. Using this particular dermatologist that missed a diagnosis early in the year is top of the list.  I went to see him on 30 March for a general follow up to my actinic keratosis.  He did a very brief scan of my upper body and asked if there was anything else of note.  I told him something was itchy on the top of my head (he did not include a check of my scalp when doing a once over… why is that?).  He thought it was nothing and froze it.  If a biopsy were performed on the thing it would have shown melanoma and my medical situation would likely be very different.  At the very least, I would be 6 months ahead in treatment right now.  At best, I might have not progressed to stage III.

Let’s stop right here before I continue on a medical system rant.  What would you do?  Would you sue the doctor?  Would you confront the doctor?  Would you do anything?  Is this just water under the bridge?  Write me an email if you have any thoughts.

Back to medical rant… I own some of this as well.  Sure he missed a diagnosis but I chose that doctor and I could have pushed him to biopsy instead of freezing.  He didn’t give me that choice but I could have pushed.  Which brings me to the point; we must all take an active role in our health.  This is more than just watching what we eat and exercising.  I do that and many of you do to.  Congratulations if you do.  If you don’t, that’s your problem and you own the outcome of that 100%.  But I am now talking about choosing your doctors carefully and being knowledgeable about care.  Don’t be hypnotized into thinking that all doctors are perfect, that they are up in the latest developments and that they already know what is in your best interest.  They are human just like us and they make mistakes.  They know stuff but not everything.  Your job is to find the best caregivers because the best ones make far fewer mistakes.  The best ones also follow the latest practices instead of relying on whatever may have worked in the past.

If you think all dermatologists are the same, think again.  Some use microscopes to examine the skin.  Mine did not.  Some take digital pictures and track things carefully.  Mine did not.  Some take biopsies of everything they are concerned about.  Mine did not.  Do you think my outcome would be different had some of those standard practices been followed?  I think it would have been different but remember I made the choice of doctor.

All this is just dermatology.  What about digestion and ophthalmology and other specialties?  How many doctors have we collectively seen that kinda sorta do their job?  Are we confident that they are putting their best effort in on their work? Are they really putting your best interest first?  I have always felt that have and still feel in general that they do.  However, if you even suspect the answer to be no, change your doctor.  I had a choice to see any dermatologist.  I chose this doctor who was really nice and personable but he clearly was not the best.  I knew he wasn’t the best but I liked him and it wasn’t that hard to get an appointment.  Convenience and pleasantry are terrible reasons to see a doctor.  Don’t make the same mistake I did.

I am also thinking about how incredibly fortunate I am to have the team of doctors I have right now.  These people are the best of the best.  If any group is going to keep me alive it is them.  How many other cancer patients can feel that same way I do?  I suspect many feel they have good doctors but are they really getting truly world class care?  How many people become much sicker or die each year because their doctors were not the best in their field?  I suppose not every person can see the best but if you have a choice, make the right one.  And, the good news is that not all maladies require the best.  If you have a sore throat do you need the best ENT?  Probably not.  But when you have something serious, find out who is the best and do everything you can to see them.  Don’t compromise.  Pull every string you can, can in all your favors.  That is a promise I am making to my family and myself from now on.  No skimping or being laissez faire about healthcare.  And if I hear of any of you taking a lazy attitude, you are going to get an ear full from me.  I apologize in advance but this is the price you are going to pay for being my friend.

While the wife is out, eldest daughter and I baked chocolate chip cookies.  I love to cook and hope to have many more kitchen capers with my kids.  I wanted my daughter to see me still strong and able to do stuff.  I also wanted my youngest, who comes home from camp tomorrow, to know that the cookies were baked by her dad… even after surgery.  It’s a small thing but perhaps it may help.

The dizziness is slowly subsiding and at this moment it is just barely noticeable.  I have been eating but still not particularly hungry.  The pain is tolerable but starting to increase as the anesthesia leaves my body.  My shoulder/neck area is starting to light up as the nerves begin to recover.  I suspect pain is going to be part of my life for a while.  I think/hope I can handle it.  It is now almost 9:30 and I am ready for sleep.  Wish me luck.